A teenager who bravely fought her doctors’ attempts to withdraw her life support until her death can finally be named after a gag order was lifted.
Pictured for the first time is Sudiksha Thirumalesh – the bright 19-year-old girl who died in an extraordinary legal battle with an NHS trust.
Until now, even after her death last week, she could only be identified as “ST” because her case was kept secret due to draconian reporting restrictions.
Sudiksha was keen to put her name to her heartbreaking story before she died after suffering a cardiac arrest last Tuesday.
The remarkable teenager, who suffered from mitochondrial depletion syndrome, died just four days after speaking anonymously to the Mail about her ordeal and her unwavering desire to fight for the chance to live from her hospital bed.
“Don’t forget the order… I want everyone to know, I want everyone to know what’s happening,” the defiant teenager said in the motion to lift the restrictions this morning.
Pictured for the first time is Sudiksha Thirumalesh – the bright 19-year-old girl who died in an extraordinary legal battle with an NHS trust
Sudiksha Thirumalesh’s parents, Revathi Malesh Thirumalesh (left), Thirumalesh Chellamal Hemachandran (centre) and Sudiksha’s brother Varshan Chellamal Thirumalesh, make a statement outside the Royal Courts of Justice in central London
Amid their grief, her family were forced to continue their battle in the Supreme Court this morning after traveling from their home in the Midlands to London.
Following the hearing, her devoted older brother Varshan read out a statement from the family in court, which said: “After a year of struggle and heartache, we can finally, without fear, speak the name of our beautiful daughter and sister in public: She is Sudiksha.” She is Sudiksha Thirumalesh, not ST.
“Despite our grief and the ongoing shock of everything we have been through, today a part of us is at peace.”
“Sudiksha was a wonderful daughter and sister who we will cherish forever.” We cannot imagine life without her.
“Today we demand justice for Sudiksha and for others in her situation.”
The family said they were traumatized by the NHS trust’s decision to take legal action to remove Sudiksha’s life support treatment and impose the blanket restrictions.
Sudiksha was suffering from mitochondrial depletion syndrome and was hospitalized last year after contracting Covid-19, which worsened her degenerative condition.
The previously outgoing teenager, who enjoyed watching Love Island and going out for coffee with friends, was dependent on a ventilator, a feeding tube and regular dialysis.
The doctors who treated her argued that because of her deteriorating and terminal condition, the kindest and most responsible course of action was to “de-escalate her intensive care” and make her as comfortable as possible.
Amid their grief, her family were forced to continue their battle in the Supreme Court after traveling from their home in the Midlands to London
Andrea Williams, executive director of the Christian Legal Center, which is supporting the family, said the “disturbing case” shows the “urgent need for an overhaul” of the justice and health systems
Despite her difficulties, the remarkable straight-A student was determined to live long enough to travel to North America, where she hoped to conduct potentially life-extending clinical trials of nucleoside therapy.
Her doctors said they wouldn’t stand in the way of a transfer to North America if she got a spot in a clinical trial, but her family said draconian reporting restrictions prevented her from going public and raising funds to support the £1.5 million needed to be raised to undertake the journey.
This afternoon her family said: “We are deeply disturbed by the way we have been treated by the hospital administration and the courts.” We were gagged, silenced and, most importantly, prevented from seeking specialist treatment abroad for Sudiksha.
“If she had been allowed to undergo nucleoside treatment six months ago, she might still be with us and recovering.”
“Sudiksha said she wanted to “die and try to live”. She did that. We are so proud of her.
“We did not seek this fight, this fight came to us from a “system” that gives up on life all too readily.” We were brutally silenced, intimidated and brought to justice in our hour of need.
“It is shocking that a family is at risk of incarceration in the midst of stress and tragedy,” they added.
Violating a court-ordered reporting restriction constitutes contempt of court and, although rare, can technically result in a prison sentence.
Her case was remarkable compared to other end-of-life cases because Sudiksha was an adult and was able to express her unwavering will to live.
Still, a judge ruled in August that she lacked the mental capacity to make her own decisions or even hire her own lawyers.
The decision was made despite two court-appointed psychiatrists saying she was “competent,” with one noting that she was “comfortable, smiling, alert and lucid.”
The doctors successfully argued that their refusal to accept their view was a sign of delusion and that the Court of Protection should decide their fate.
She had appealed the decision but unfortunately died before it could be heard.
Her family’s lawyers confirmed this afternoon that despite her death, the family will appeal – due to the verdict’s potential impact on the jurisprudence.
“This Christian family has shown true courage in the face of opposition from the NHS and the Court of Protection,” added Ms Williams (pictured).
“Sudiksha was called ‘delusional’ because she said she wanted to live. The judge’s sentence was cruel and no patient should be treated this way.
“We were never out for revenge, we just wanted justice and the opportunity to tell our and Sudiksha’s story.”
The family is still fighting for restrictions on identifying the NHS trust, hospital and doctors involved. Judge Peel reserved judgment on the matter until Monday.
Andrea Williams, executive director of the Christian Legal Center, which is supporting the family, said the “disturbing case” shows the “urgent need for an overhaul” of the justice and health systems.
“This Christian family has shown true courage despite opposition from the NHS and the Court of Protection,” she said.
“This deeply worrying case has highlighted the urgent need for an overhaul of the way end-of-life decisions are made in the NHS and the courts.”
“There is an urgent need for a more open and transparent system.” Justice happens in the light, not behind closed doors.
“We are concerned about how many other patients and families have gone through similar ordeals and have been forced to suffer in silence,” she added.
She said the case was a “wake-up call” for the government to launch a public inquiry into the courts’ practices in relation to end-of-life cases.